WALKING FOR HOPE: Family picking up the slack in fight against Alzheimer’s

By Joe Sneve

August 19. 2014 12:24PM

Floyd Heinemann spent the last eight years of his marriage by his wife’s side – feeding her, consoling her and telling her everything was going to be OK. But it wasn’t going to be OK.

Isabel, his wife of 55 years, was living with Alzheimer’s disease, an incurable form of dementia that effects more than five million Americans. The Heinemanns, like the thousands upon thousands of other South Dakota families with loved ones suffering from the disease, were helpless as her conditioned worsened.

On May, 13, 2010, Alzheimer’s disease took Isabel’s life – 34 days before the couple’s 56th wedding anniversary.

Despite the staggering numbers – 1 in 85 people and 16,000 South Dakotans – the medical community is still searching for effective ways to treat, let alone cure the disease.

“It’s just the fact that you know that they don’t have a chance. There’s no cure,” said Floyd Heinemann, reflecting on his final days with his wife. “Once they have it. You know they are going to die.”

But Heinemann says it doesn’t have to be that way. He points to a disparity in federal and privately-raised funds invested annually in Alzheimer’s research compared to other terminal diseases like cancer, heart disease and HIV/AIDS.

Thefederal agency National Institute for Health spends over $5 billion a year on cancer research, nearly $3 billion for HIV/AIDS research and more than $2 billion to battle heart disease. Those figures dwarf the $566 million NIH spends each year combating Alzheimer’s disease.

“We aren’t getting the funding from Congress to get good research,” Heinemann said. “It’s really sad because I know someone who was diagnosed a few months ago and they were put on the same drugs that (Isabel) was put on 13 years ago.”

The diagnostic rates for Alzheimer’s have increased dramatically in recent years while other diseases have dropped, illustrating the gap in research dollars, said Leslie Morrow, South Dakota Executive Director for the Alzheimer’s Association.

As a result of the federal government making sizable commitments to combat heart disease, HIV/AIDS and breast cancer,deaths from these diseases have declined, she said. From 2000 to 2010, death rates from heart disease, stroke and HIV/AIDS have all declined by more than 15 percent.

Morrow said because no similar commitment has been made in finding treatments for Alzheimer’s disease, deaths from Alzheimer’s increased 68 percent during same time. It is now among the top 10 causes of death in America that can’t be prevented, cured or even slowed.

“We know that about every 67 seconds somebody in America develops Alzheimer’s and by the year 2050, we think that’s going to be every 33 seconds,” she said. “That’s going to put our numbers at about 16 million people.”

For the 25th year, the Alzheimer’s Association will host a Walk to End Alzheimer’s Saturday, Sept. 13 at Sertoma Park in Sioux Falls where hundreds are expected to come out in support of a message that they’ve had enough.

Heinemann said the walk has become a must-attend event for his family since Isabel’s passing. They walk as Team Isabel.

“We have to raise more money for these people and that’s why the walk is so important,” he said. “(Isabel) would be very proud.”

Team Isabel last year raised more money for the Sioux Falls walk than any other team. The $5,100 they collected topped their 2012 walk record by nearly $1,000.

Morrow said until the federal funding for Alzheimer’s research picks up, the best hope the afflicted have are people like the Heinemanns who work to raise awareness.

“There’s so much still that we don’t know about this disease, which is why we point to research dollars being so critical,” she said. “That’s the only way that we are going to figure out what’s causing it.”

To donate ahead of next month’s walk, contact the South Dakota Alzheimer’s Association chapter at 800-272-3900. To help the Heinemann’s meet their fundraising goal of $6,000, make checks in care of Team Isabel.